You do not need to leave your room. Remain sitting at your table and listen. Do not even listen, simply wait, be quiet, still and solitary. The world will freely offer itself to you to be unmasked, it has no choice, it will roll in ecstasy at your feet. --FRANZ KAFKA

Sunday, December 30, 2007

The Woman Who Said No

When I was admitted to the hospital for my second surgery, my middle-aged roommate immediately turned her face from me. "Pull the curtain!" she instructed my nurse in a surly tone.

I quickly decided that the closed curtain was fine with me. I had no need to admit such an unpleasant person into a life that felt, at that moment, difficult enough.

However, after Ted left, it became harder to ignore the woman behind the curtain. She argued noisily with her boyfriend on the phone, then slammed down the receiver. When she refused to answer his repeated calls, her angry, self-satisfied refusal--and the constantly ringing phone--jangled in the space between us.

"Get me something to eat!" she bellowed to the front desk, after ringing her call light.

However, when the aide appeared with the liquid diet I knew all too well, she was infuriated.

"I said I wanted something to eat--not this shit."

"It's what your doctor ordered," the aide explained, politely setting down the tray.

"Then get the order changed, and bring me a goddamn turkey sandwich--on white bread!" my roommate railed. I expected the unnaturally green jello and the broth to hit the wall at any moment.

But to my amazement, within a half hour," the woman who said no" had been served another meal--including a turkey sandwich on white--just like she ordered it.

"What idiot brings a turkey sandwich without mayo?" she said, in place of thank you. The aide and I exchanged a look

But a moment later, the mayo appeared.

In the course of the day, I heard my roommate say no to the boots that stimulate circulation after surgery. "They're effing hot. You wear them if they're so great," she yelled at the nurse.

She also refused to get up and walk, though the nurses repeatedly and patiently explained how important it was for her healing. Eventually they stopped asking.

I pretended the curtain between us was as thick as the Berlin Wall. On my side, I read, talked with my family on the phone or with the nurses I'd come to know in my first visit to the floor, and tried not to think too much about what would happen the next day.

But at three in the morning, I broke.

My roommate had called for pain medication in her own imitable way. But once again, she was unhappy with what her doctor had ordered.

"No Percocet!" she shouted. "I want Dilautid!"

Assuming, as I often do, that "orders" are unimpeachable, I figured we both were in for a long night after she refused the Percs. She had already begun to moan with theatrical gusto.

A short time later, the nurse returned with her drug of choice.

Well, that did it. It was three in the morning, and my roommate obviously had no desire to speak to me, but I couldn't remain silent.

"I have to admire your ability to say no," I said--and in many ways, I meant it. "I thought the only possible answer around here was 'okay.'"

"Yeah, I been listening to you," she snorted. "I bet you've been walked on your whole life."

Hmmm...I contemplated that.

Then she asked me about my upcoming surgery. Apparently, our lives had permeated the curtain more than either of us cared to admit.

"I'm cancer free for over a year," she said. "I beat it and you can, too--if you stop being such a wimp."

I contemplated some more...

The next morning, just before my surgery, the nurse came in and said she was being discharged.

"What if I'm not ready to go?" she asked.

"I'm sorry," the nurse said. "Do you have clothes to wear home?"

"No, I came to the hospital naked," my roommate snapped and turned her back.

Only after the nurse left did she begin to cry. She was still in a lot of pain, she said; and there was no one at home to take care of her.

She rang the call bell repeatedly, complaining about pain, an inability to stand or make it to the bathroom. She couldn't possibly go home; she wouldn't.

A short time later, the orderlies came to wheel me to surgery. Since her back was to the wall, I assumed my roommate was sleeping.

But just as I reached the door, she called out to me. "Hey, good luck, okay?"

I thanked her and told her I would see her when I got back.

However, when I came in from the recovery room, her bed was made up and empty as if she'd never been there.

I continued to think about her though--about the power and limitation of the "no" she used so frequently. I wondered what her life was like, and if she really had no one at all to help her out.

And though I did not envy her life, I learned something from her. On my last day in the hospital, the nurse came to give me one of the painful heparin shots I'd been receiving twice a day.

Their purpose is to prevent blood clots. And since I was taking long, frequent walks in the halls (wanting to see the Charles River!) I didn't really think I needed them.

"What if I said I didn't want it?" I asked the nurse, covering my arm with my sleeve. "What if I just said 'no?'"

"You could do that, I suppose," the nurse said, withdrawing the dreaded needle. "I'll mark you down as non-compliant."

Non-compliant. It's something I've rarely been called, but on that morning, it felt like an unexpected victory.

63 comments:

Good to challenge, yes indeed. Your roomie may not be getting ideal care by not just saying no, but shoving everyone away, refusing everything. Balance, standing your ground, reasoning choices, yes. Oh, yes. You do have the right to refuse treatment, best done after considering what it is for, as you did. Cheers.

zhoen: I'm sure that by resisting the wise advice of her caregivers, she pushed away what she needed most--both in the hospital, and probably in life as well. But she also held up a mirror to me--reminding me of that need for balance, and that it is possible to tilt too far in the other direction, as I often do.

What a room-mate to end up with! She sounds like a right pain-in-the-butt, but I suspect that she keeps pulling the curtain around most of her life. I cannot quite express this but reading your account of this woman makes me hope that she is ok, wherever she is now. Through your post she may have inspired more people to be "non-compliant" every now and then; I wonder what she would make of that?

Hmmm... it's possible to be just as strong (non-compliant, if you want to call it that — but Zhoen makes a good point) with humour rather than aggression. Of course, doing it with humour, leaving the recipients smiling instead of gritting their teeth, takes a great deal more skill. And effort.

(The last time I spent a night in hospital, I shared a ward with several other patients, one of whom had vaguely similar characteristics to your roommate. I think the other guy in the ward desperately wanted to knife him. However, I did warm to him when he had visitors and directed their attention to me by referring to, "That boy over there.")

Best wishes for a great New Year with all the most hoped-for news, Patry.

Your posts often leave me thinking to the extent that I can't comment because my brain hurts. I am not a no-sayer on my own account, and it's very much tied to my wish to be compliant. I'm going to spend the rest of the day wondering if I could have been as thoughtful and brave.

An amazing post. Beautifully written and inspiring. It must have been difficult having a roommate such as that, but you have proven that there are lessons to be learned from even the most unpleasant of people. Even so, I'd sooner live with a sweet spirit, filled with love, like you seem to have.

Her insurance probably wouldn't cover her to stay long enough to get well, just like your insurance obviously won't give you a private room. Three years of fighting with insurance companies alone can make "no" a reflex, I promise. Insurance companies, including publicly funded benefits schemes, are excellent teachers of this by example.

Meanwhile, I have been silently chewing my nails on your behalf because I almost got killed at MGH trying to be nice to everyone. See, I was employed there as well as a patient, and it's a teaching hospital, and I had all these ideas about being respectful and congenial with my colleagues, contributing to science, blah, blah, blah. Okay, it wasn't a dramatic almost-got-killed scenario; it was more torture by inches. In return for all my conviviality and chipper attitude, I got to spend HOURS at a toss of my precious irreplaceable time waiting for overbooked fifteen-minute appointments, a resident broke my latest met trying to get a biopsy, a chief lied to me and attempted to humiliate me in front of a cadre of other residents, and a surgeon tried to boss me around like he was in charge of this project, not me. After that I started insisting on things -- like a different surgeon.

I am sending you a long letter of unsolicited advice which I hope you will feel free to ignore if you like. Saying no -- sometimes graciously, sometimes not -- to other people telling you what you should do is another activity you may become well familiar with in the coming months. Everyone's got an opinion. None of them has to live with the consequences.

Just for the record, I've been a "noncompliant" metastatic malignant melanoma patient for almost thirty years. I pick and choose what I will comply with and how, and I don't hire doctors or engage the services of institutions who can't handle this approach. My way is not the right way for everyone, and I like to think I'm not nearly as horrible as your recent very sad roommate, but I'm just sayin', there's worse things to be than "noncompliant," especially in an overcrowded teaching hospital.

It's good to see life's little lessons coming through in your writing again. And the lesson this time seems to be balance. Walking the middle road between the "yes" and the "no".

Hang in there Patry...with a base of "friends as wide as I see on your site, balancing should be like a walk in the park. If you feel yourself losing your balance though, reach out to some of the hands being held up...We are here to help...Be well...

So much for me to think about. I'm also a person who tends to make few waves and sometimes I need a reminder that total compliance is never in our best interest any more than total combativeness is. It is all about balance, isn't it?

What a fantastic post. There's a great story there that I know many of my minister friends would like to use in a sermon. As we roll into 2008, please know the prayers are continuing from this end - look forward to hearing from you whenever you've got time!!

I just got finished watching my sister be the most amazing advocate for our mother who was in the hospital with bacterial pneumonia. She asked questions, wanted detailed explanations about medications, and made sure that nurses after a shift changes were completely apprised of my mother's condition. I would like to see us all become our own advocates, and be non-compliant without antagonism, when it is absolutely in our best interest to do so. Your roommate taught us all a lesson, except that her nature will probably push away the good things that may come her way.

BTW, one of my mother's hospital roommates tossed her used bedpan across the room. The nurses responded by putting Depends on her. Another very good lesson.

Myf: Thank you! I predict 2008 will be a great writing year for you. Your stories never fail to enthrall.

Delia: Sometimes finding--or at least searching for--the golden thread is the only thing that gets us through. Many blessings to you.

Kathryn: I didn't expect to find anything worth contemplating at 3 in the morning from a woman I'd already decided I didn't much like....but I did. That's the strange part...

lisa: Maybe we can make 2008 the year of balance?

larramie: Thanks for reminding me that in that sense I AM non-compliant. I'm fighting back with two ounces of bliss!

marja-leena: "Good health, wishe choices, and joy" What else do we need? Thanks so much for your powerful good wishes.

Gayle: Now THAT'S something worth saying no to. Thanks for the link. I hope every reader here will check it out.

Matt: In her own way, my roommate preached a powerful sermon. I continue to think of her as she was the last time I saw her--the anger and rudeness stripped away to reveal a deep loneliness and fear. . Many thanks for the prayers.

Tish: Just as long as she doesn't write a blog post about the "wimp" in the next bed! Eek. Reminds me that it can be dangerous having a writer around...Talk soon! xox

Robin: Every person who is ill needs someone like your sister in their corner. I'm so glad your mother had her--though I'm sure you did some powerful advocating on your own. As far as the flying bedpan goes, yikes! That certainly is a lesson.

Mirrors can be so very hard for us...because sometimes they're reflecting back to us that which might contain some valuable truth for us...if we can see past the distorted magnification of extreme behavior. She sounds like one of those for you...and bravo to you for being able to see past her defenses and self-defeating behavior to recognize that there was some wisdom there for you. Patry, may 2008 bring healing and solace and happiness to you. Much love to you.

Bless you for making me smile and cry simultaneously, Patry, and all my warmest love and wishes for the new year. I'm thinking of the day when I shall read some clear or sidelong reflection of these incidents in one of your novels.

Great post! and good for you for being non-compliant but i've always admired you for being so agreeable/pleasant/easy to get along with (i'll stop here). and i do believe you get more bees with honey even tho at times it does seem like the squeaky wheel wins.Happy New Year Sister!!

non-compliant is probably a nice term for what i can be sometimes! i need to learn balance in the opposite direction. my being a little more agreeable could balance out my fiery side. rdl is right - honey is a better baiter!

hope the new year brings many blessings and better health for all. sending love and good wishes every day. it is always such a treat to find a post here.

Egads, how about 'no' to having that woman as your roommate when you're trying to heal! I'm glad you found something to learn and value in it, though. That's a talent that's very healthy, being able to find ways to cope when you're faced with aggravations like this patient and the much larger and scarier "aggravations" like illness. Best wishes for your continued healing in 2008, Patry.

The way hospitals are organized now -- I mean no reflection on the people who work in them, who do the best they can -- either you or someone rooting for you has to be ready & willing to say no. & to make sure the information actually flows. When my Mom has been in the hospital, it's been extraordinary how much information gets lost every time a shift changed or a new specialist comes on board. They're *terrible* at information-handling. I don't know why, but don't assume that the pertinent information is traveling from one person to the next. It's best to be obnoxious and risk telling them something they already know. They tend to present everything they're doing and administering as something that was deeply thought out and arranged in consultation with everyone; often enough it's just something that struck somebody as a good idea after half a glance, or none, at the charts.

They'll be a lot more careful with you, too, if you strike them as someone who'll kick up a ruckus if they make a mistake :-)

Much love. Did I ever tell you how much I liked the Liar's Diary? I don't think I did, it was at some crisis-time or other. Anyway, I thought it was marvelous. Thank you (belatedly!)

Yea! Patsy. I got a shiver at the end at your small victory. But you'll never be like your room mate and I'm so glad. And I am one who would think later about the words "non-compliant" in my chart and feel misunderstood and labeled.

This little story enthralled me. I couldn't guess where it was going. I'm glad the Berlin Wall had some cracks in it and some common ground to be shared.

I've often admired those who say no, and REALLY mean it when they say it. They seem like they know what they want, but maybe they don't...maybe their no is only a reflex, a stock answer. Maybe your roommate's boyfriend that she argued with could have taken care of her a bit, but instead, she said no.

Balance, the middle road, is where it's at. A bit of yes, a bit of no. Nothing is ever perfect. Our lives are works in progress -- we find our balance as we go along.

Your post has given me a lot to think about. Though I've always been an optimist, I still wonder if those constant nay-sayers somehow have an inside track on something I'm missing...

Wishing you a happy new year full of love, light, stories, learning, balance, and some healthy non-compliance along the way. :)

It seems sometimes our teachers come in the unlikeliest forms. From the civility of her last comment to you, it sounds as though at least a little of your kindness might have influenced her as well. Thank you for the kindness you've shown me - it means more than I can say. Sending so many good wishes your way for the New Year, Patry.((hugs))

Patry, I hadn't checked your blog in a while and when I did and saw all these new posts at first I was excited you were blogging again and then. . . not. I am so so sorry to hear of what you are going through and I am sending blessings and good wishes your way. I pray that you will fully recover and write all about it in your wonderful way. Best wishes for a new year filled with recovery. Love & hugs.

Patry...what a great post! Your roommate sounds like some of our firms clients(I work for a law firm the does Social security disability law). I hear the term non-compliant almost every day. Non-compliance and balance. Yin and yang. Ding and dong. Your post is a classic and you are a master story teller! Happy New Year!

I've not gotten over to 'see' you for awhile... my goodness you've been going through so much! I'm sorry to hear about your cancer, and hope you have been getting the help you need. I will keep you in my thoughts and prayers as the new year comes. Blessings on you and yours.

Being a nurse.. I kind of see both sides to this. I also understand the feelings of loss of control that come with being a patient.. the entire atmosphere of a hospital perpetuates this feeling. But I also know that any patient who says no will have their wishes respected. At the same time.. the "no" has to be documented so that the physician who ordered the treatment is aware that the caregiver did indeed attempt to fulfill the order. I guess the biggest thing with all of this is that one does not have to be rude or hurtful when saying no. Like most things there is both a right way and a wrong way to go about it. And also.. like in most things.. interpretation is everything.

Your story is a wonderful example of how we learn from one another, even in the most difficult of circumstances. It sounds like the woman who was always complaining and saying no had a difficult life - after all, more flies are killed with honey than by shouting and being rude to people. I'm glad you questioned your care and are doing what feels right to you. xoxox

However rude your roommate was, she did have a point. You should read this book: When the Body Says No: Understanding the Stress-Disease Connection by Gabor Mate. He talks about how repressing emotions and an inability to say no can lead to auto-immune diseases (cancer being one of them).

Dearest Patry - I just caught up with your news and wanted to tell you how terribly sorry I am that you're going through this horrible phase in life. But I'm sure you'll beat it, and go back to writing the best books in the world. I adore your writing, and cherish your friendship. Big hugs and let me know if I can do anything at all for you. ;o)

My heart and prayers are with you through this difficult time. It's important that you remember that doctors are human, and fallible. You have every right to question what they order, and refuse if it seems right. If the doctor really thinks it's necessary, he/she will come talk to you about it.

It's a hard lesson to learn, I know. My son was in Rainbow with Leukemia in July. I'm sure you can understand the absolute initial terror when you hear that dreaded 'cancer' word. We spent 15 days in the hospital with him being poked, prodded, tested, etc. It was terrible watching my seven-year-old being subjected to it, but I was amazed at his strength!

I'm shy by nature, particularly with authority figures, but found that where my son's treatment was concerned, I could overcome it. It was a definite learning experience, and one that I will take with me.

I'm happy to report that he is now in remission, and doing well on his targeted chemo. I hope and pray that we'll hear a similar report from you in the near future!

Hi Patry,Great post! I think your roommate is partially right - that you have to look out for yourself, but I believe you should always be nice, but firm about it. Everyone wants to be treated equally and with respect and she missed the mark here. I'm glad you are doing Ok and wish you the best.

Children bring such a fresh outlook to every situation - even one like cancer! I am always amazed at how resilient my son is. He goes in for a bone marrow test tomorrow - hopefully it will be all good. Just in case we're taking the other children in for blood tests to check if any of them are a possible donor, should the need arise. Caleb, of course, thinks it's only fair that his siblings get a taste of what he's had to endure, though he did say he felt kind of sorry for Quin, who's only 3, because he doesn't understand what's happening.

I bet Quin understands more than we know!

Hang on to those happy moments - it's what helps sustain you through the worst of any situation!

I've been living with a rare medical condition since I was 30, diagnosed just 4 months after my marriage.

It's been quite a ride, and reading your words here - about being an advocate for oneself - I am reminded of how it took me far too long to learn this lesson. As a doctor's daughter I had a blind trust in doctors, and it wasn't until an unsupervised resident nearly killed me with his arrogance & ignorance that I finally stood up for myself.

Now, I am still nice but when I need to, I put my my foot down very firmly when it comes to unnecessary Heparin, refusing to take a medication prescribed by a harried resident that does the exact opposite of what I told him I needed, or refusing to be woken up numerous times at night when I am stable enough to be left alone from midnight to 7 am for much needed sleep.

You're lucky that someone modeled it for you (in a rather extreme way of course!) and I wish you health, happiness and success with your new book!

What a brave and awesome post. Thank you for sharing your experience and that of the other woman. It reminds me that sometimes we need to stand up for what we want or need, and perhaps risk being 'non-compliant'.

About Me

My second novel, THE ORPHANS OF RACE POINT, an epic love story that spans several decades and is tested by murder, betrayal, faith, and destiny, set amidst the vibrant Portuguese community in Provincetown, Massachusetts will be published by Harper on January 7, 2014.